Literature Review

Milton Village Open House builds community to support caregivers of individuals with Alzheimer's, dementia, or other cognitive conditions GreatNews.Life; by Lauren Grasham; 10/6/25 To help healthcare providers better understand the numerous resources available, Milton Village hosted an open house on Tuesday, September 30. Milton Village is a collaborative effort between Milton Adult Day Services (a program of the Center for Hospice Care) and Alzheimer’s & Dementia Services of Northern Indiana (a REAL Services program) to provide comprehensive care and support to individuals living with Alzheimer’s or other cognitive conditions and their caregivers. “Inviting healthcare providers to see our facility and learn more about our programs is a great way to help them understand our unique model,” said Sarah Youngs, director of Milton Adult Day Services. “As providers tour the facility and hear how our guests engage in the programming, it’s so satisfying to see them recognize what this can mean for their patients and the patients’ caregivers.”

Emergency Department care coordination program for assisted living residents with dementia-A qualitative studyJAMA Network Open; Grace F. Wittenberg, Peter T. Serina, Nichole E. Stetten, Ann Reddy, Ellen McCreedy; 8/25Care transitions to the emergency department (ED) from assisted living centers (ALCs) for residents may include incomplete or inaccurate information during transfer. These transitions can be especially difficult for vulnerable populations, including persons living with dementia (PLWD). In this qualitative study of a care coordination intervention, CCMs [complex care managers] advocated for their patients remotely by filling information gaps, particularly for PLWD and patients in hospice, and perceived that the intervention was associated with improved patient care. CCMs also identified key areas for improvement, such as to increase ED staff awareness of the program and to expand program hours.

Communication surrounding treatment preferences for older adults with dementia during emergency medical services responseJournal of the American Geriatrics Society; by Lauren R. Pollack, Danae G. Dotolo, Anna L. Condella, Whitney A. Kiker, Jamie T. Nomitch, Elizabeth Dzeng, Nicholas J. Johnson, Thomas D. Rea, May J. Reed, Michael R. Sayre, Erin K. Kross; 9/25Emergency Medical Services (EMS) providers, capable of rapidly delivering life-prolonging interventions, are often first to respond to acute health concerns for older adults in the United States. Prior work has shown a preference among many people with dementia for comfort-focused care near end-of-life. EMS providers treating critically ill older adults with dementia face challenges that may hinder their ability to elicit treatment preferences, in particular when responding to calls from professional caregivers. Direct communication with surrogate decision-makers may facilitate goal-concordant care.Assistant Editor's note: Being an RN for over 40 years, I have seen many changes in health care, especially in what is expected now of patients/families. I remember the day when nurses were not permitted to share with the patient his/her own BP reading; instead, we were to tell patients to "ask the doctor". Back then the doctor controlled almost all aspects of the patient's care, as well as the sharing of information with the patient about his/her own medical condition. I am glad those days are gone. Now, patients are expected to engage in ongoing discussions regarding advance care planning, execute written advance directives, and are expected to share their care preferences with health providers and loved ones and/or caregivers. It would be an ideal world where health care providers were continuously aware of evolving patient preferences and could always deliver goal concordant care. I believe we need to keep working toward this goal, but I also understand that this expectation can add burden to patients who are already extremely burdened with the many difficult aspects of serious illness. I believe that, as health care providers, we need to appreciate that some people simply cannot or will not share their preferences; it is simply too scary, too foreign, too difficult to do so.

The effect of the Care Ecosystem Collaborative Care Model on end-of-life outcomes for people with dementia and their caregiversAmerican Journal of Hospice & Palliative Care; by Lauren J Hunt, Krista L Harrison, Rachel Kiekhofer, Jennifer Merrilees, Alissa B Sideman, Sarah Dulaney, I Elaine Allen, Kirby Lee, Winston Chiong, Sarah M Hooper, Stephen J Bonasera, Tamara L Braley, Bruce L Miller, Katherine L Possin; 8/25Collaborative care models that feature care navigation have been found to have a range of benefit for people with dementia (PWD) and their caregivers, but their effect on end-of-life (EOL) outcomes has not been robustly evaluated. Our primary objective was to evaluate the effect of the Care Ecosystem-a telephone-based collaborative care model for dementia with care navigation-on EOL outcomes for PWD and their caregivers. Compared to Usual Care, Care Ecosystem caregivers had higher ratings of caregiver self-efficacy prior to PWD death ... but caregiver's satisfaction with EOL care did not differ between groups ... Qualitative analysis revealed Care Ecosystem provided helpful emotional and practical support, but participants wanted more anticipatory guidance, more information about hospice care and earlier referral, and better coordination with the healthcare team.

Living with dementia: To improve lives, we need to change how we think and talk about this experience in aging societies EurekAlert! - AAAS (American Association for the Advancement of Science); peer reviewed publication by The Hastings Center; 9/24/25 To experience or even contemplate dementia raises some of the most profound questions: What does it mean to be a person? How does someone find meaning in life while facing progressive neurological deterioration? ... To improve the lives of our fellow citizens who are living with dementia or providing dementia care, all of us need to pay attention to how we imagine and talk about these interwoven and increasingly common experiences, concludes Living with Dementia: Learning from Cultural Narratives in Aging Societies, a special report published by The Hastings Center for Bioethics. This report responds to calls from health care and social service practitioners for new ways to depict and talk about dementia, a collective term for Alzheimer disease and related dementias. Editor's Note: Click here for free access to multiple articles in this crucial report, such as

“I know you didn’t want to stay”: Emergency Department conversations about disposition for people living with dementia The Gerontologist; Justine Seidenfeld, Matthew Tucker, Melissa Harris-Gersten, Gemmae M Fix, Nina R Sperber, Susan N Hastings; 8/25When people living with dementia present to the emergency department (ED), the disposition decision- to admit them to the hospital or discharge them home- can be difficult for providers. Major themes included 1) disposition conversations had significant variation in depth and content, 2) patient and care partner participation varied with disposition, and 3) satisfaction was driven by alignment of disposition preferences. Our study suggests that there are no consistent formats of disposition conversations for people living with dementia. Improving quality may be most needed when preferences are misaligned, and this should be identified early in the encounter.

Patient-and caregiver-identified goals for advance care planning in patients with dementia or cognitive impairmentDementia; by Kristin L Rising, Angela M Gerolamo, Nazanin Sarpoulaki, Venise J Salcedo, Grace Amadio, Robin Casten, Anna Marie Chang, Alexzandra T Gentsch, C Virginia O'Hayer, Barry Rovner, Brooke Worster; 8/25Despite an aging population and acknowledged importance of advance care planning (ACP) for persons living with cognitive impairment, few engage in ACP. Most existing tools to facilitate ACP discussions focus on medical outcomes, despite research documenting that persons with cognitive impairment often have quality of life outcomes as primary goals. This qualitative study engaged persons with mild cognitive impairment (MCI) or dementia and their carers to identify outcomes that are most important to inform development of a tool to guide ACP interventions with this population. Participants identified 23 outcome categories for ACP interventions within the following six domains: social life, family involvement, current lifestyle, physical independence, financial independence and healthcare goals. Of the 23 outcome categories, the majority (86%) were quality of life goals and only a small fraction (14%) were healthcare specific.

Perspectives of hospice medical directors on challenges and solutions for improving care for persons living with dementias (PLWD) and their caregiversAmerican Journal of Hospice and Palliative Care; by Taeyoung Park, Abhay Tiwari, Elizabeth Luth, Yongkang Zhang, Simone Prather, Micah Toliver, Giancarlo Chuquitarco, Veerawat Phongtankuel; 8/25A larger proportion of PLWD [persons living with dementia] outlive the 6-month hospice eligibility requirement compared to other terminally ill patients, which leads to high rates of hospice live discharge. Hospice medical directors (HMDs) are physicians with unique insights into both the clinical aspects of care and the administrative and regulatory guidelines of hospice care delivery. To address these challenges, HMDs suggested (1) establishing a dementia-specific hospice program, (2) extending hospice benefit availability for PLWD, and (3) creating a step-down service for families experiencing live discharge from hospice. HMD participants suggested providing additional supports and/or reforming the current Medicare hospice benefits to better address end-of-life care for PLWD, who may require prolonged and intensive end-of-life support.

Raising the standard of Arizona’s dementia care Lovin' Life; by Lin Sue Flood; 9/7/25 Arizona is setting a bold new standard to better support families impacted by dementia. A groundbreaking state mandate requires all memory care facilities to provide up to 12 hours of specialized dementia training to their staff, plus four hours of continuing education each year. This extensive training combines online video modules with hands-on, in-person skills sessions. Hospice of the Valley’s experienced Dementia Team is leading the way as one of the agencies the Arizona Department of Health Services has approved to deliver this comprehensive training. The nonprofit organization is unique in offering it as a free community service.

How to move a parent with dementia against family resistance—and stay legal Advisorpedia; by Carolyn Rosenblatt; 9/3/25 The phone call came to Dad’s daughter (FD) at 6 AM. Again. This time, it was the night caregiver reporting that her father had fallen while trying to get out of bed. She had jumped up and tried to stop him but she could only get to him in time to break his fall. ... The caregiver was exasperated. She needed more help and SW did not provide it. It was the third incident in two weeks, and FD knew something had to change.

Do dementia care management programs work? A podcast with David Reuben and Greg SachsGeriPal podcast; by Eric Widera, Alex Smith, David Reuben, Greg Sachs; 8/28/25With all the attention focused on Alzheimer’s biomarkers and amyloid antibodies, it’s easy to forget that comprehensive dementia care is more than blood draws and infusions. On today’s podcast, we buck this trend and dive into the complexities and challenges of comprehensive dementia care with the authors of two pivotal articles recently published in JAMA.

The Faith Care Family Project: A pilot intervention for African American dementia family caregiversAmerican Journal of Alzheimer's Disease and Other Dementias; Noelle L Fields, Ling Xu, Ishan C Williams, Fayron Epps, Samantha Tinker; 8/25The Faith Care Family (FCF) Project was a telephone based, volunteer-led intervention for African American Alzheimer’s disease and related dementias (AD/ADRD) family caregivers that was piloted in one predominantly African American church. Church volunteers indicated overall significant improvements knowledge of AD/ADRD after the training as well as after the intervention. Quantitative results indicated that caregivers increased their knowledge of dementia, reported improved coping skills, and reported increased positive aspects of caregiving. Feeling a connection, normalizing the challenges of caregiving, gaining or reinforcing knowledge, and sharing community resources were themes from qualitative interviews with the family caregivers.

"It may cost you your money, it costs you your life": A framework for financial hardship in dementiaGerontologist; by Krista L Harrison, Emily R Adrion, Juliana Friend, Sarah B Garrett, Madina Halim, Michael Terranova, Alissa B Sideman, Nicole D Boyd, Georges Naasan, Joni Gilissen, Pei Chen, Melissa D Aldridge, Daniel Dohan, Michael D Geschwind, Alexander K Smith, Christine S Ritchie; 7/25Care for persons with dementia costs ∼ $500 billion annually in the United States. Few qualitative studies or conceptual frameworks of the financial experiences of people impacted by dementia exist. This study examined how patients and caregivers impacted by different types of dementia and at different points in the disease journey described financial issues within a palliative care context... Even in a well-resourced population, the financial toll of dementia can be substantial. The Direct-Emotional-Logistical framework of dementia financial hardship can be used to assess financial impacts in palliative care settings.